An exploratory study of adolescents and emerging adults with spina bifida knowledge of their individual education program: Implications for health care transition planning

Issue title: Immigration and Transition: Emerging Trends in Spina Bifida Care

Guest editors: Timothy Brei and Jonathan Porter Castillo

Article type: Research Article

Authors: Betz, Cecily L.^{a; *} | Hudson, Sharon M.^b | Lee, Jeannie J.^c | Smith, Kathryn A.^a | Van Speybroeck, Alexander^a

Affiliations: [a] USC Keck School of Medicine, Department of Pediatrics, Children’s Hospital Los Angeles Spina Bifida Program, Los Angeles, CA, USA | [b] USC Keck School of Medicine, Department of Pediatrics, Los Angeles, CA, USA | [c] No Current Affiliation

Correspondence: [*] Corresponding author: Cecily L. Betz, USC Keck School of Medicine, Department of Pediatrics, Children’s Hospital Los Angeles Spina Bifida Program, 4750 Sunset Blvd. MS #53, Los Angeles, CA 90027, USA. Tel.: +1 323 361 8524; E-mail: [email protected].

Abstract: PURPOSE: The purpose of this study was to explore adolescents and emerging adults (AEA) with spina bifida (SB) understanding of their Individualized Education Program (IEP) and to identify factors related to their knowledge about their own IEP. METHODS: Data were collected from January 2015 to July 2016 from 79 adolescents with SB. A ten-item questionnaire including demographics and questions specifically addressing IEPs was used. Qualitative analysis followed an iterative, emergent approach. Two experienced coders independently read and coded each of the three open-ended questions. It was determined that the responses of all three questions could feasibly be merged as the analysis of responses were similar. FINDINGS: This was a predominately 70 (88.7%) Hispanic sample of AEA with SB who ranged in age from 12 to 20 years (M= 15.3 years) consisting of 41 males and 38 females. All reported they have/had an IEP. Four major themes and eleven subthemes emerged from the analysis. Major themes were: The Barometer of How I Am Doing, Creating the Right Match for Learning, Obtaining the Assistance I Need, and Future Goals and Planning. CONCLUSIONS: Findings of this study reveal the IEP knowledge gaps and lack of lifestyle self-management skills AEA with SB reported pertaining to IEPs.

Keywords: Spina bifida, individualized education program, health care transition planning, adolescents and emerging adults

DOI: 10.3233/PRM-180578

Journal: Journal of Pediatric Rehabilitation Medicine, vol. 12, no. 4, pp. 393-403, 2019